Addisons Disease
Posted , 2 users are following.
I was suspected of Addisons Disease because of my dark skin, dark palmar creases, muscle weakness and body aching all over, also low steroid levels. I was surprised when my Synacthen Test was normal and I have had to stop taking Hydrocortisone. The only trouble is my symptoms have returned, but my dark skin and palmar creases I have always had.
Does anybody have any ideas or somebody/something I could refer to, I'm quite desperate and would be grateful for any help.
0 likes, 10 replies
EileenH Gabriel51
Posted
Just because your synacthen test is normal doesn't mean your adrenal glands are producing cortisol properly. The synacthen test is an artificial stimulus that shown is your adrenal glands are CAPABLE of producing cortisol - not that the very complex feedback system that results in its production is all working properly. That involves other organs and hormones (pituitary, hypothalamus etc).
The synacthen test will be different for primary and secondary adrenal insufficiency. In the primary variety the adrenal glands themselves are damaged in some way and just don't produce enough or any cortisol so the synacthen test doesn't give the expected result with corticol levels rising. In secondary insufficiency it may be because the pituitary isn't producing the ACTH that stimulates the adrenal glands, or at least, not enough (that's the stuff they injected in the synacthen test). There are other causes though.
I assume you are under an endocrinologist? If you aren't - you should be. Whether it is primary or secondary - adrenal insufficiency is too complex for a GP.
Gabriel51 EileenH
Posted
I cannot thank you enough for your help, on my Synacthen test results letter, the specialist said if you feel completely well, there is no need to come to your next scheduled appointment, but I don't, so I shall go and take it from there.
many thanks
EileenH Gabriel51
Posted
Oh yes, definitely go. And be very clear about your symptoms, what they are and how they returned after stopping pred. Make notes so you don't forget things and take someone with you if you think you may be nervous or unable to put your case.
Good luck - and do tell us how you get on.
Gabriel51 EileenH
Posted
Gabriel51
Posted
Gabriel51 EileenH
Posted
EileenH Gabriel51
Posted
This might help you:
https://patient.info/forums/discuss/understanding-synacthen-test-results-438017
It has a couple of useful links that may help you understand but if I put the links here they'll have to be moderated.
Your pre-injection level is normal (above 200) - it is also important what the post-injection level is. You may not be able to react to stress. Or there may be another problem. The endocrinologist is the expert - and that's why I said to go and be very clear about the return of symptoms without the hydrocortisone.
How old are you? Are you young and on the contraceptive pill? That can also interfere with the results. But the endocrinologist is the person to ask about it all.
Gabriel51 EileenH
Posted
I am 50 years and I have the contraceptive implant in my left arm.
I did not have a post injection, only a pre-injection.
Will let you know how I get on.
Thanks for all your help in this.
EileenH Gabriel51
Posted
Gabriel51 EileenH
Posted
Saw the DR from Endocrinolgy Team, mentioned the implant and he said it would not interfere with the test, also the blood test showed that there was nothing hormonal that was wrong and that they were discharging me.
I also added that I have back pain when I walk as well as my symptoms returning. He suggested rheumatologist for my symptoms and also it could also be something to do with my heart beat?????
He is sending letter to GP and I think he will recommend it or I may have to request it myself. Can't remember what he said.
Will let you know.